MDA Guest Ambassador Blog: Cycling Towards a Cure, One Mile at a Time (Charcot-Marie-Tooth disease)

Lilly F. is a 15-year-old rising junior from New York.  Lilly was diagnosed with CMT1a when she was 4 years old.  With no approved treatments for CMT, Lilly follows a strict regimen of physical therapy to keep in the best shape that she can. She is a true New Yorker who loves pizza, hanging out with her friends, and the Yankees.

Lilly’s grandmother, MDA Staff Member Sabrina Allen, Lilly, & Lilly’s mom (Jenneen Fauci) pose at the Trans-New Hampshire Bike Ride event. 

In the challenging world of extreme sports, where a mix of determination and endurance get you across the finish line and the accolades that follow, being recognized for something other than athletics is truly special. This year, I had the incredible privilege of being named the Honoree for the 2024 Trans-New Hampshire Bike Ride. The annual event, which started in 1988 as a mission to raise money and awareness for people living with muscular dystrophy, has grown over the years. What started with 9 firefighters on the backroads between the borders of Canada and Massachusetts across New Hampshire has increased in popularity, making it a premier endurance ride in the US while raising money for the Muscular Dystrophy Association. To be selected to be part of something so long-standing and impactful is truly overwhelming and quite ironic given that at 15 years old, I have never been able to ride a bike. Now don’t get me wrong, I have tried. No, I mean really tried. Like Pheobe on the show Friends tried! Training wheels, no training wheels, assisted, gripping for dear life, but it didn’t matter because inevitably I would fall off, with only my bloodied knees proof of just how bad I wanted it.

I was born with Charcot Marie Tooth Disease, Type 1A (CMT), and diagnosed at the age of 4. The signs of my disease were there long before my diagnosis. It was my lack of balance that told my parents that something was just not right. It’s normal for a toddler to fall, but to face plant several times a day, well that wasn’t typical. The road eventually led my parents to an MDA Care Center in the Bronx, NY, and that’s where they received the news that I had CMT.

Lilly F. and members of the Littleton Fire Rescue

It was a scary time for my family, but the MDA supported us through it. They held us up like training wheels do and allowed us to lean on them while we figured out how to balance in this new world.  I was quickly seen by specialists, started physical therapy, my family and I became involved in community events, and, eventually, I attended MDA Summer Camp – the best week of the year. The MDA helped me realize I’m more than a girl who can’t ride a bike. That I am just as gifted and talented as everyone else. So, when this opportunity came up to be part of something to give back to the organization that helped me and my family in so many ways, I jumped on it.

The Trans-New Hampshire Bike Ride is nothing short of amazing. Each year, dozens of athletes with various abilities and skill levels train for the 157 mile ride while raising money. The reward for their hard work is a 3-day exploration of the beautiful scenery of New Hampshire in June. They ride rain or shine and it’s a good thing too, because this year’s bike ride was wet, with the majority taking place in torrential downpours. The mornings start with a yummy breakfast, followed by a safety briefing and a plan for the day. With a firetruck escort out of town, which I was able to ride along on (it was so cool!), the bikers pedal off into the day’s adventure. Support staff rush to the checkpoints to meet the bikers as they ride in, providing them with nutrition and water. Every time a biker rode in, we would clap and cheer for them. It was so exciting to see them zip in and out, but not before they had a chance to ask me about my life and experiences living with CMT. These people who were pushing themselves to the limits of their bodies still took the time to ask me about my struggles – and that is the heart of a Trans New Hampshire Bike Rider.

Mike Rogers, MDA Coordinator for the Professional Fire Fighters of New Hampshire, and Lilly

The day ends with a group dinner and a fund-raising award ceremony. I knew I had to give a speech at the big dinner and was so nervous before I had even arrived in New Hampshire. But after spending one day with these amazing people all my nerves went away. It was at that dinner that we learned they had raised more than $90,000 for the neuromuscular disease community. Over the years, the Trans-New Hampshire Bike Ride has raised over 3 million dollars for MDA.

Unfortunately, due to our long drive back and the weather, I couldn’t stay to cheer them across the finish line the next day, but I was there in spirit. To anyone considering participating in or supporting events like these, I encourage you to take that step. Whether as an athlete or a volunteer, your involvement can truly change lives and bring hope to those who need it most.  And for my Trans-New Hampshire biker buddies, you ride for those of us who cannot, but in doing so, pave our way forward.  We draw from you and the MDA the strength and courage to keep our balance as we travel down the road of life. And yes, the road will have curves, hills, and valleys, and yes, our legs will get tired, but we will pedal on with the strength of you behind us cycling toward a future without neuromuscular disease. Together, we can make a difference—one race, one honoree, and one community at a time.